Joanne Chapman has MS and a toddler. She tells what having a little one has taught her about managing her MS fatigue.
As a mum living with relapsing MS, I struggle with fatigue. For me, it feels like I'm swimming in thick chocolate (I can dream!) and usually I can't carry on. How do you look after a little person when it's hard enough to look after yourself? These are the things I’ve found helpful.
1. Don’t put pressure on yourself
Maybe you feel guilty that you're shattered when you should have energy. Remember, you are living with MS, you don't need to put any more pressure on yourself. It took me a long time to get my head around this.
2. Know your energy drainers
Those things that just zap the life from you. Little man is like one of those battery bunnies, with all the energy that I don’t have. I sit on the sofa while playing with him. So whether it’s cube stacking, jigsaws, throwing balls, watching probably too much toddler television, you name it, we do a lot of it with me sat down and little man, the whirlwind, running around.
MS is like having a battery that can't be fully charged. A rest doesn't make it go away but it does help. After being busy or having others around, especially at the weekend, I plan rest times. On Mondays, I don't plan anything.
I try not to feel guilty, so little man and mummy have a slobby day. I get frustrated that any activity feels like walking up Kilimanjaro, but you have to pat yourself on the back for at least trying. We have MS! If you don't feel like doing it, that's fine too.
4. Ask for help
Looking after little man has made me realise that you can't struggle on. Asking for help is not a sign of weakness. I spent a lot of time refusing help, but then I realised I had to ask. MS fatigue is such an invisible disability. Educating yourself and others is important but if some don't listen, don't take heart.
5. Do the best you can
MS fatigue can feel like a battle, a daily one for me, but remember you only have one shot at being a mummy and doing the best you can is the only option.